Let's Talk About Weight Gain

Firstly, I haven't blogged for years for many reasons but the top two are: one, I lost my ability to focus and think and two, I got tired of complaining and feeling like no one cared. But, lately I have been thinking I really need to continue blogging if only for awareness. I still run into ER doctors who truly do not understand lupus at all. 

I want to talk about lupus and weight gain mostly because I have gained so much weight since I was diagnosed. I went to dinner last night and looked in the mirror and freaked out. I look awful! 

I typically spend most of my time at home and in bed and if I go out once a week it is a lot so I typically never really look in a full length mirror. I've been in a kind of depression the past couple of years. I can no longer work as a teacher. When I try to exercise, I feel awful for days. So, I send my kids to school in the morning and call it a victory. Then I go to bed and go back to sleep. I bingewatch shows. I read sometimes...not enough because again I can no longer focus. So, that has been my life. 

When I saw my my reflection yesterday it shocked me in to action. I went walking after dinner for 30 minutes last night and tonight. That seems like nothing, but to me it is big! But, I know what is coming tomorrow or the day after...a flare that will bring me to my knees but this time I am going to push through. I must. I am obese when I never have been. Most people with lupus die of heart disease and I am now 47 and have cholesterol.  It has become a life and death decision.  I must stay with it not just because I am overweight but perhaps it will keep the myriad of symptoms at bay. Maybe it will help my depression. Maybe I will be able to teach again. It is a lot of maybe's...God help me.

When your gut is telling you something

http://www.mollysfund.org/2015/11/lupus-and-the-gastrointestinal-system/

Okay, so lupus brings on a myriad of gastrointestinal problems, but so does fibromyalgia and I have that too, and hypothyroidism and you guessed it, I have that as well. So, my I am navigating being sick as it comes. Let me tell you, it is difficult when you don't know what the hell is wrong with you and what illness is causing it and neither does your doctor. It makes me want to scream!

The worst thing is the chronic constipation. This last run lasted 5 weeks. That is right folks, 5 weeks without going to the bathroom for number 2. I was taking all the meds the doctor had given me from the previous time, along with fiber and water and nothing until today. It was only a few rocks but I felt a little better. At least it wasn't like the last time I had a dry spell; after 4 weeks of constipation I then got severe diarrhea and cramps.

Well, I am going to take today as a small victory but I have to see the gastroenterologist although I dread it. I find it hard to find the energy to get up and take a shower, forget about actually getting to my appointment and waiting for hours to see another doctor without answers. It gets to be depressing and demoralizing when doctors don't or can't help, but I know I can't give up.  

http://www.mollysfund.org/2015/11/lupus-and-the-gastrointestinal-system/

Lupus Fog- What a Bummer!

Since my diagnosis in 2011, my brain has slowly turned to mush. It used to be easy to work around. I downloaded tons of organization apps and didn't go anywhere without my agenda. But, aside from the constant pain and lack of sleep, losing my mind was what made me lose my job. I just couldn't keep up with my teacher paperwork and my mom responsibilities. 

So, now I stay home. I look at my day as a success if I am able to accomplish one thing...one goal. For example, if I am able to get up and dress my kids for school- to me this is a major accomplishment because I make my kids miss school due to my illness at least 3 times a month. Completing even one single inane chore makes me exhausted. 

This past Friday, my son told me he really wanted me to attend his last middle school football game. I hadn't been able to attend not even ONE game the entire season because I hadn't been able to get up that early in the morning, but I wanted to be there so badly. The next day, game day, I woke up early, and I sat in bed watching Netflix until I had a sudden urge to check my phone. I saw a text from my son telling me the game had been moved to 11 am and I was suddenly horrified when I realized it was 1 pm and I had missed it! I felt like the worst mother! How could I have forgotten about his game? It was as if someone had taken the Etch-a-sketch that is my brain and erased everything. 

Lupus, fibromyalgia, thyroiditis, sjogren's disease, and possibly scleroderma have changed my life drastically, but to lose my mind as well? I don't even feel like the same person. I am now the sick, cognitively-impaired, disabled  woman who can barely take care of herself much less 5 kids.

Lupus/Fibromyalgia/Sjogren's Syndrome Sufferer's Anthem

http://lupus-exposed.tumblr.com/post/131235168394/this-is-the-lupusfibromyalgiasjogrens-syndrome

Exceeding Expectations

Today I dropped off my son at school, I went to my daughter's school to order a shirt, I went to therapy,  I dropped off something for my husband at work, I picked up a form from my oldest son's school and I dropped off a prescription.

I was feeling pretty proud of all I accomplished until I spoke to my mother. She started asking me if I had done A, B or C. I was so angry at her! I yelled at her, "Mom, I could barely get out of bed most days...I do what I can!" "But the kids need your attention...."

I just hung up on her. Holy hell people can be so damn insensitive! What sucks is that she is the MOST supportive person in my family...including my own husband.

http://lupus-exposed.tumblr.com/post/127733181669/today-i-dropped-off-my-son-at-school-i-went-to-my

I Am Tired of Trying to Figure Out What is Wrong With Me!!!

I have lupus, fibromyalgia, sjogren's syndrome, and thyroiditis. Last night I was feeling horrible with severe joint pain, muscle aches, stomach cramps, diarrhea, a migraine,  and what I thought was a UTI. This was the second night in a row so I decided to go to the ER.

I drove myself to the ER, because all my husband could do was ask if I was sure I needed to go as if he didn't notice how much pain I was in. Anyway,  they ran tests and said my lupus was in check and all I had was a UTI. I don't understand why I was so sick then.

They had to give me morphine for my level 9 pain because all I had was Hydrocodone and it wasn't helping. Do any of you have any ideas.

No job yet

I have applied to so many teaching jobs and even instructional aid jobs but I have only gotten two calls. Two calls...two interviews...but NO JOB. I have been teaching for 17 years-15 of which I spent at the same campus, but after taking a few months off on sick leave, I can no longer get a job even as an assistant.

Boy do I feel inept and useless. It is as if all my qualifications and experience were erased by lupus, fibromyalgia,  sjogren's syndrome, or hypothyroidism. I was so excited to start at another school where no one knew I was sick- where no one looked at me like spoiled goods.

Oh well, if it is one thing chronic illness has taught me is to look on the bright side; I will work as a substitute teacher and God willing someone will see my worth and hire me.